Hello everyone!  New here, so I thought I'd introduce myself, though I see a few familiar names from the DINET forum.

To start with diagnoses, I have had ME/CFS for 15 years and am severely affected (housebound, partly bedbound).  I'm pretty sure we got that diagnosis right, I know a fair bit about ME by now.  

I'm currently being investigated for POTS, which I've been showing signs of for a while but which got worse after I had my gallbladder out in March this year.  My GP is in the process of trying to secure funding to get me referred to a POTS and ME specialist a couple of hours away.  I'm in Scotland, by the way, so think NHS.

Various people on the internet have been suggesting to me for some time that I might have a mast cell problem.  I think they may be right, and cunningly arranged to have myself referred to a dermatologist in August.  Unfortunately she had no interest in this, told me (erroneously) that the dermographism couldn't cause itching, and told me that the various small brown marks increasing in number on my torso and neck are a species of wart.  (I'd originally been diagnosed with dermographism a few years earlier, and nothing had really been done about it at the time.)  She took a few blood tests, after which I collapsed as I'd been off my antihistamines for a day (unfortunately the nurses didn't call a doctor, and two hours later I went home), and later wrote me a letter suggesting that I was getting itchy skin because I use codeine.  I don't use it that often, and somehow I don't think it's causing itching three weeks after I've taken it.  I've had two bad collapses leading to being taken to A&E (ER to Americans) since then, one partly triggered by a UTI, one partly triggered by stress.  The hospital can recognise OI but that's about it, they don't have a clue what to do with me.

After I saw that specialist, I started taking different types of antihistamines together, as she had advised.  I'm on 10mg cetirizine (Zyrtec) and 10mg alimemazine (Vallergan).  My vulvodynia, which flare up horrendously around my period, almost entirely vanished as soon as I started the combination, although taking those meds individually hadn't helped it.  I also have an interstitial cystitis diagnosis, though that hasn't been too bad for the last couple of years.

I've not had a tilt table test yet, but I do home versions with my blood pressure monitor.  I don't always get a big response, but I usually do: heart rate increase of anything up to 40bpm, and blood pressure all over the place, including a big variation in pulse pressure.  Sometimes it takes 15 min before the HR gets over the 30 mark, although those tests are also usually taken from sitting to standing for practical reasons.  When I am having a reaction, I start to get dizzy, itchy, sweaty and breathless a few minutes after standing up.

The itchy skin has been getting worse of late.  No one really knows why.  I'm never entirely sure what counts as flushing or as hives.

A week ago I started to get a strong reaction during lunch.  I had to stop eating due to the abdominal pain, though I'd had most of the food.  Then we got me into the shower, and my support worker said, "You're covered in red dots."  I think it was mainly my torso; it was hard to see my back clearly enough, though we did try with two mirrors.  Half an hour after eating, I had sudden diarrhoea, and I also noticed a sharp headache and the pain in my left shoulder (calcific tendinitis) flaring up.  I ended up munching a couple of cetirizine and had a nap.  I was still painfully itchy by evening, so I rang NHS24 and got a doctor who told me to take an extra cetirizine and prescribed cimetidine.

The cimetidine (400mg twice daily) appeared the next morning.  I was originally prescribed it for three days, but since a few days later I started to get intensely itchy during supper (which was reheated leftovers from lunch, and all foods I eat regularly without difficulty), the doctor told me to take it for another fortnight.  I also started quercetin with bromelain that day, since it sounds good.

I'm still generally fairly itchy, and noticing that this flares up from standing up, having a shower, or eating.

Before I forget, I noticed something interesting when I googled the cimetidine.  Apparently there was a small trial where it was remarkably successful at treating calcific tendinitis of the shoulder, including actually dissolving the calcium deposits.  It was half the dose I'm on now, taken for three months.  I'm thinking of asking my GP whether it's worth trying, just to see if we can get my shoulder cleared up.  That said, I've felt like a dead cat for much of the last two days, and I don't know whether the cimetidine could be responsible for that.  Does anyone know more about it?

I'm fairly new to talking about POTS, and even newer to talking about mast cell stuff, so please go easy with the terminology!  I've had a very quick browse here, and noticed a few people saying that mast cell problems tend to manifest different in people with POTS.  Could you tell me more about all of this?

Thanks for the welcome.  I haven't gone into all my symptoms because I have so many medical conditions that I don't know where to start, and I don't know how much could be a mast cell problem and how much could be something else.  If you're curious, ask.

I've just noticed that I've suddenly developed lots of red dots on my left hand, and I mean blood-red, not the pink dots I get as a reaction to heat or what have you.  Some of them feel slightly raised, too.  I noticed the raised one on the inside of my wrist developing earlier, I think it was today or yesterday, but it was pink then, not red.  Does anyone have a clue what that could be about?

Having had a quick google, they might be petechiae, and they can be a sign of clotting problems.  Maybe I'm on too many meds?

I don't actually know if anything I'm on acts as a blood thinner.  I've heard the quercetin might, but I don't think my GP will know anything about that.  I'm on:

cetirizine
alimemazine
temporarily taking cemitidine
temporarily taking loratadine
alverine citrate
Adcal D3
multivitamin
B complex
Omega 3 oil (1.5g echium oil)
quercetin with bromelain

I've only recently reintroduced the echium oil and multivitamin, and the quercetin is new.

Are you saying that leafy greens make the problem better or worse?

I'm on 400mg of the quercetin twice daily, is that enough to thin the blood?  I seem to remember checking that before I ordered, and you'd need a much higher dose before it had that effect.

I'm not on fish oil, I'm on echium oil.  I rang the manufacturer and they told me that while fish oil can thin the blood in very high doses, echium oil is extremely unlikely to as it contains the precursor to EPA rather than actual EPA.

I'm also on a coenymzated B complex, just one capsule instead of two, but I've never heard of that causing clotting problems, and I've been on it for months.

The petechiae have been going away, I'm glad to say.

I do have some broccoli due in the order this afternoon.  Unfortunately I'm reliant on my support workers to cook for me, and they do not have nearly enough time, so we've been sticking to familiar, easy recipes.  I eat plenty of veg in general, though, I'm vegan.

It looks like an interesting diet, but I think I'd need a very quiet time to be doing it, where I didn't have recent meds changes, that sort of thing.  Now is not that time - I'm not even getting enough care in the home to get all my meals made, let alone to go on an intensely restrictive diet.  I'm vegan, which would make it even more limited, plus I think I'd have to cut out a lot of medication and I'm not sure if that would be a smart move at the moment.  It's definitely useful to know about for the future, though.

I'm definitely not getting stomach discomfort with the bromelain, I'd have noticed that.  No rashes of late.  I was having a bad time with itchy skin for a bit, no idea why, but that's pretty much settled down, although admittedly I'm on a higher dose of antihistamines at the moment.

The petechiae haven't returned.

My 24 hour ECG (Holter monitor) appointment has just come through.  It's in a month.  Does anyone have any ideas what I should do in terms of coming off meds beforehand?  With my current high dose of antihistamines and similar, my heart rate is behaving itself far better than usual, so it looks as if I'll have to come off them for the test.  Last time I tried that, I slept appallingly.  Should I taper them down instead of stopping cold turkey, and if so, at what speed?  My doctor doesn't have a clue about any of this, they're prescribing antihistamines like nobody's business but not actually investigating why I need them.